Calling all TNs
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Fighter, you can kick this! Get your attack mindset in place. Your facing what we all dread. Remember we are here for you - through thick & thin.
Inspired so glad your back. You give us good insight & great information. We missed you. I was doing yoga two days a week in the mornings. Have now added three additional days but evenings. Beginning to feel that I live in my yoga clothes. But good exercise & great for stress relief.
Just saw my dermatologist & her best doctor friend has TN. Survivor for 5+ years so far. They went on a doctors group vacation & my dermatologist found a lump while on vacation. Her doctor friend took her straight from plane to her doctor to get checked out. Thankfully negative, but she was told we ladies need to stay viligent on BC. My doctor & I had the same surgeon. We both agreed he is a GEM!
Hang tough ladies. We can beat the crap out of this!!
Marsha
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Fighter! Big hugs and kisses!!! You can do it! I am 33 yrs old and I have possibility too! Have you changed diet after you diagnosed first place? When I studied myself about cancer and food, and I attended cancer seminar, I was referred to see naturopathy doctor who is also attending at my Cancer Clinic. I just met him a few days ago and did lots of questions, then he gave me my personal fit diet with each treatment. He also took my blood samples and check more detail through chemical level in my body and give me back with more specific result. I am highly recommended if you never done this before. This is recommended regardless of your diagnoses. My case, I have to cut all junk food and fast food first, and high carbohydrate items like white rice, bread, pasta, and potatoes. And Take more green and colorful vegetables and fruits.Nuts and seeds, plenty of water. I have to cut my coffee, tho. Then, be active like go for walk 15-20 min during my Chemo and gentle yoga is good. Also he recommended to get acupuncture and oncology massage that is provided at my Cancer Center. (it cost unless your insurance covered but they have grant program).
Those naturopathey
I just done with my ddAC chemo yesterday. I am doing great after the treatment. Not much side effect so far. Worried about this wkend when IV anti nausea run out from my body... But I have two other anti nausea be ready, so I hope those helps me! I just can't stand being nauseous. I am totally ok with losing hair! LOL!
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Fighter! Big hugs and kisses!!! You can do it! I am 33 yrs old and I have possibility too! Have you changed diet after you diagnosed first place? When I studied myself about cancer and food, and I attended cancer seminar, I was referred to see naturopathy doctor who is also attending at my Cancer Clinic. I just met him a few days ago and did lots of questions, then he gave me my personal fit diet with each treatment. He also took my blood samples and check more detail through chemical level in my body and give me back with more specific result. I am highly recommended if you never done this before. This is recommended regardless of your diagnoses. My case, I have to cut all junk food and fast food first, and high carbohydrate items like white rice, bread, pasta, and potatoes. And Take more green and colorful vegetables and fruits.Nuts and seeds, plenty of water. I have to cut my coffee, tho. Then, be active like go for walk 15-20 min during my Chemo and gentle yoga is good. Also he recommended to get acupuncture and oncology massage that is provided at my Cancer Center. (it cost unless your insurance covered but they have grant program).
If anyone never went to the naturopathy, I recommend it at least to get consultation and see what you think about it. This is also able to prevent cancer or any other diseases too. Be healthy is simple but very important. I have to try hard because I love sweets and fast food (not everyday) and I have to cut of all of them.
I just done with my ddAC chemo yesterday. I am doing great after the treatment. Not much side effect so far. Worried about this wkend when IV anti nausea run out from my body... But I have two other anti nausea be ready, so I hope those helps me! I just can't stand being nauseous. I am totally ok with losing hair! LOL!
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SCREAMING!!!!!!!!!!!!!!!
All scans came back clear PET and Bone!!!
Spot is an isolated primary. My fight is not over, but the out come looks clearer. Doctor feels like this something we can take care of.
I will be gone for awhile to fight ladies, but please keep me in your thoughts. I want to start chemo right away like this coming Thursday.
I changed my diet, but I can admit that I need to do better. Thanks ladies. My gloves are on!
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oh Fighter_34 GREAT NEWS-doing the "touchdown" happy dance! I will keep you in my thoughts and prayers. I'm sure you'll do great! Please let us know how your doing when you can, there are lots of us here behind you! Now go do something nice for yourself and have a much better weekend!
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Yes, big happy dance for you fighter!! That's wonderful news. You've got this one! Lana
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Hi Ladies,
Thought I would introduce myself.....I am 49 so to be 50 in May of this year. I was diagnosed with breast cancer in 2005, large 4 cm tumour in left breast, 3 positive lymph nodes, er/pr+,her2-.
I went through treatment in 2005/2006 with 6 months of chemo - 4 a/c and 4 taxol, 5.5 weeks of radiation, ovary suppression Zoladex for 1.5 years post radiation, started on Armidex for 5 years. I had my ovaries removed in 2008 at age 44.
by safesaver" in_rurl="http://i.txtsrving.info/click?v=Q0E6NTQzMjU6MzMxODpmYXN0OjQwZDUwYjA0NjNhY2UzYTRmOWE5OTIxYWI5MjhlNGQ4OnotMTQ5OS0yODc2MDk6Y29tbXVuaXR5LmJyZWFzdGNhbmNlci5vcmc6MTEwOTUxOmEwOWM1ODg3NjJkMzY0ZWY2MjdkMjY2YTdjY2FkNDU1OjNlYjI2YWRiOWZkYTRjMTNiZTAzZDhiZjdmYmNkZjFh" id="_GPLITA_25" href="#">Fast
foward to 2010, younger sister was diagnosed with bc at age 42 and died in April 2012 of breast cancer. My older sister was diagnosed in July 2013 at age 50...she is doing well.Due to my by safesaver" in_rurl="http://i.txtsrving.info/click?v=Q0E6NTQzMjU6MzMxODpoaWdoIHJpc2s6NTNiNTc2YzI1OGE5MzI2YTE3YTZhZWViMGJmZTdiYjc6ei0xNDk5LTI4NzYwOTpjb21tdW5pdHkuYnJlYXN0Y2FuY2VyLm9yZzoxMTA5NTE6YTA5YzU4ODc2MmQzNjRlZjYyN2QyNjZhN2NjYWQ0NTU6OTYyODAxYzg2MTJiNDY5MWI5MTkzNTk4ZjM3MzE2YjM" id="_GPLITA_24" href="#">high risk
family history which not only includes myself, two sisters and an aunt....I had a prophyalatic masectomy with immediate reconstruction (DIEP) on Dec 16/13. My pathlogy report relieved a new primary in my left breast again. This time my receptors are Triple Negative. It is invasive and thankfully 1 cm. I truly believe the surgery I had saved my life. I wouldnt have done my regular screening again until April and god knows what size the nasty little bugger would have been then.The surgical oncologist who did my surgery in another hospital than where I had treatment said that I would need chemo.
I know that normally you cant use the same chemo regime again, I had a/c in 2005...definitely know the red devil is a "one shot deal". I am waiting for the surgical oncologist to refer me back to my old oncologist who released me from his care to my regular GP after I hit 5 years to see when everything gets rolling again.
I so hate the fact that the beast is back and THAT IS BEING KIND WITH WORDS, HATE THE FACT THAT I HAVE TO LOOSE MY HAIR AGAIN AND REALLY HATE THE THOUGHTS OF DOING CHEMO AGAIN!
Michele
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Fighter. So glad about additional tests clear.
Glad your lacing up again. You can do this. We are here for you. When ever you need to vent log on & let it out. You are one strong lady. Give it your best fight.
Marsha
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Fighter I am so happy to hear your scans are clear! I understand your wanting to focus on your treatment right now, but please check in once in a while and let us know how you are! Big hug to you!
Hi Curlylocks. So sorry you are going through this again. We are here for you! With such an extensive family history are you BRCA positive?
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Fighter - I am soooo excited to hear this new.....jumping up and down
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Fighter, I am so happy that all your other test results came back clear and it is a local recurrence. What a relief! You can lick this!
Curlylocks, first, I'm so sorry about your sister. This disease sucks. Second, I am amazed about how they found cancer when you had your prophylactic BMX. Wow! That must have been a huge shock. I agree, that surgery very well could have saved your life. I hear you loud and clear about not wanting to lose your hair again. I'm sitting here bald and without eyebrows and eyelashes due to AC. I feel like I look like a ghost when I look in the mirror these days without makeup.
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Tifj,
My two sisters were tested, younger sister who passed away was negative for mutuation, my older sister was tested last year and they said her results were uniformed negative. This basically means due to extensive family history they believe the breast cancer in my family is genetic but cannot prove it with genetic testing so far as they only currently test for the BRCA1 and 2 gene in Ontario, Canada.
I was not eligible for testing as the rule here is you have to have "three family members" diagnosed with breast cancer that havent been tested. As my younger sister and older sister were tested they will not test me now as there are only two family members that havent been tested, myself and an aunt. The genetist also said that the chances of me having the mututation for BRCA1 or 2 are like winning a lottery since both my sisters tested negative.
Simplelife4 - Thanks for your kind words. I miss my little sister every single day, she was my "soul sister", we were very, very close. She was way to young to die (44). I had my prophy mast with reconstruction just a month ago and they test the breast tissue that was removed. Yes, I truly believe it saved my life, god knows how big that invasive tumour would be by April since that would have been when I would have gone for regular screening. Never mind, I had dense breasts so it might not have been found:(
Michele
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fighter...wooo hooooo....I am so happy it is a local recurrence. Stay strong through your treatment and we will hear from you soon I hope
Michele...welcome to our wonderful TN family. I am so sorry that you must deal with this again. Hugs and courage coming your way
Mags
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Fighter, I logged on just to get your update, and WOW, I'm so happy for you girl! That's a major victory for you, and this will set the tone for more good news to come your way from here on out. Now you can focus on treatment and soon afterwards you'll be on your way to focusing on the future. So very happy for your update! This is truly a blessing. Thank you God!
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Yoga is very effective for a myriad of reasons - from physical to mental well-being!
For anyone who wants information on nutrition, reduction risk, pesticide guide, metformin study info, etc, you are welcome to send me your e-mail address and I will send you the information I have. It's all in an e-mail - so you get the works - I don't separate it out do to the number of requests I receive. I have each attachment saved by file name of what it is so you can easily access only what you want to.
"Practical Principles of Some Lifestyle-Oriented Breast Cancer Risk Reduction"
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Fighter absolutely great news. You have always been strong and with your boxing gloves on you will send this minor setback to the kerb. Keep going my love and soon it will be a distant memory. Big hugs.
Michelle welcome. You are in very good hands on here. So sorry to hear about your sister, yes she was far too young to die. We will always be in your pocket and the girls on here are full of useful information. Big Hugs.
Inspired glad you came back to us. Have missed your fabulous information which help us all. Big hugs.
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Great news Fighter, prayers are with you. Curly locks so sorry this is back. This new to me that the same chemo can't be used again. I am having AC dense dose for 16 weeks with Nuelasta shots.
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Fighter - So glad to hear that it is a local recurrence. It's a shame you have to go through this again but you can beat this! And, yes, take time for yourself to fight this but do let us know occasionally how you are doing. We are here for you - Best of luck!
Curlylocks - Our stories are quite similar. I have been tested for the BRCA gene mutation and am negative but I have an extreme history of bc on my Dad's side of the family. My grandmother had it twice and it's easier to name the aunts and cousins who didn't have it than those who did. My mother had it in 2000 but she was 78 at the time so they didn't feel hers was genetic in any way - she had an Mx, chemo, rads and did very well. However, in 2004 my younger sister found a lump (she had her mammo 7 months earlier and it was clear). By then it was already stage 4 - she had chemo (which did not shrink the tumour - it grew), then surgery and more chemo but she passed away in 2006. Like you, she was my very best friend and I miss her daily too.
Around the same time, my first cousin on my Dad's side was also dealing with it and we lost her shortly after that.
Since I was considered high-risk, I entered a double blind clinical drug trial for examastane at the Ottawa General Hospital - yes, I'm in Ontario, too. The very good thing about taking part in drug trials is that you are very carefully monitored - therefore, I was getting mammos every 6 months and an MRI yearly. Well, in 2012, the MRI detected a tumour - it actually ended up being two small ones. I found out that I actually was on the examastane (and not the placebo) but it prevents hormone receptor positive cancers and mine was TN. Since then, I have had an Mx and chemo and am 18 months out. While I do get an annual mammo, I don't trust them to find fast growing bc like TN. Therefore, I have an MRI every year which I pay for myself (since I'm not on the trial anymore). My niece (my younger sister's daughter) was able to qualify for BRCA testing once I got cancer and she is negative too - she also gets an annual MRI.
After I got my negative BRCA test result, the genetisist asked if I would be willing to be tested for some other genes which they believe MAY have a connection to bc as well. I don't remember their designation but I did have the test and was negative for them as well.
I am sorry that yours has returned after passing the 5+ year mark. You were very lucky on the timing of your mastectomy and the fact that you caught it so early and have had it removed. Good luck with your chemo and whatever treatments you need.
Doreen
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The BRCA test is now commonly administered with an additional test, called the BART test. It stands for BRAC Analysis Rearrangement Test. The Rearrangement tests to see if the sequencing is out of order. My genetic counselor explained it as ingredients going into a cake recipe, but putting them in wrong produces an abnormal outcome. Many insurances now cover this additional test.
DorMac, can you meet with a BC doctor who can write a script for an MRI, so that you can get it covered? I have MRI yearly as well as ultrasound yearly, alternating every 6 months. My insurance approves it - but I realize you are in Canada - protocols of insurance may very greatly. If you are having problems with insurance approval, maybe you can make the MRI the yearly procedure, and then pay for the mammogram out of your own pocket, if the mammo is less expensive than the MRI.
Curlylocks, thank goodness you had the surgery when you did. We'll be wishing you all the best through this treatment!
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Inspired,
The second test I had wasn't the BART test. If I find the paperwork, I will post what they were testing for (don' t hold your breath, though).
The choice of paying for the mammo and getting the MRI covered is not an option. Here in Ontario, we have what is called the Ontario Breast Screening Program (OBSP) and they decide who and what are covered. According to them:
Which women between the ages of 30 to 69 are at risk of developing breast cancer?
- Women who have already completed genetic testing for breast cancer and have received confirmation of a genetic mutation.
- Women who have not completed genetic testing themselves, but who have a parent, sibling or child with confirmation of the genetic mutation.
- Women with a family history that indicates hereditary breast cancer syndrome and who have greater than or equal to 25% lifetime risk of breast cancer confirmed through a genetic counselling.
- Women who received radiation therapy to the chest before 30 years of age as treatment for another cancer or condition (i.e. Hodgkin's disease).
If you are between the ages of 30 and 69 and identified by a physician as high risk for breast cancer, it is recommended that you have yearly screening using both a mammogram and Magnetic Resonance Imaging (MRI).
My oncologist sent his recommendation for annual MRI testing to them but unfortunately, according to them, my lifetime risk is assessed (for some reason) at 17% - even though I have already had it and it is TN – so I do not qualify for the yearly mammo and MRI. I don’t know what is required to reach 25% but I might talk to the genetic counselor again. I have another follow-up appt. with my oncologist on the 17th so I might talk to him about trying again.
Doreen
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Dor Mac - hugs loosing a sister is so, so tough. My sister was a sweetheart:)
You should be able to get into the high risk screening program in Ontario. My sister lives in Orleans and due to our high risk family history she is eligible for an annual MRI along with her mamo. She is my only sister that doesnt have breast cancer. My older sister also got accepted into the high risk screening program. I will be having MRI's after I finish with my chemo treatments.
Your doctor should be able to steer you in the right direction for this or is their a patient advocate at your local hospital that can assist?
Michele
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Hi, Curly
I live in Orleans too but we are in the process of moving to Elliot Lake but my doctors are still located here so I come back for my appointments. Probably the only difference (to make me 17% instead of the required 25%) is that, although my younger sister (who was also a sweetheart) passed away from cancer, she was over 50 when she got it and died at 53. But I will definitely check again. In any case, I am definitely going to have an MRI every year - so much can happen in a year. Thanks for the info.
Doreen
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Hi, Curly
I live in Orleans too but we are in the process of moving to Elliot Lake but my doctors are still located here so I come back for my appointments. Probably the only difference (to make me 17% instead of the required 25%) is that, although my younger sister (who was also a sweetheart) passed away from cancer, she was over 50 when she got it and died at 53. But I will definitely check again. In any case, I am definitely going to have an MRI every year - so much can happen in a year. Thanks for the info.
Doreen
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Hey fighter..you can do this..I know you can...and you know you can....come back once in awhile just to let us know how you are doing...we care...we love you and want to support you.....you are one of the "old" ones here..lol...
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I have follow up with MO next Wed. I had blood drawn from my Port on fri (tumor marker check, etc). I finished chemo Oct. 25th and am doing rads now (will finish rads Jan 31st). Does anyone have ny advice of what I should be asking about? I'm going to ask about the tumor marker blood work, when my next mammo is (he already old me no follow up scans, etc.) and when am I considered cancer free or NED. I'm also going to ask about my port - does he recommend having it out right away or leaving it in for awhile - it doesn't bother me at all. I also want to ask him about still not being able to have intercourse (too dry, too tight & too sore! TMI) but I assume he'll tell me 2 talk to GYN? Am I forgetting anything? P.S. I really appreciate the info. and support from this group although I must admit it does bother/worry me when I hear someone has lost their battle or had a recurrence.
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DorMac,
Could you check with your Onc and find out exactly how he sent his recommendation to the insurance about covering your MRI? Did his office staff only complete a piece of paper, check a box and faxed it in? Or, did he craft a letter, specifically mentioning the intricate details of your case, and explaining why he requests an annual MRI provided with links and supporting documentation to his request? Sometimes even though there are hard fast rules, there are exceptions. I pulled up exceptions for my health care provider and discovered various factors that could help me to get additional coverage, one being the age at which I was dx'd with breast cancer. But many times specific individual cases call for protocols and treatments that are different than a standard mainstream course. There was a story on the Today show last year where a brother and sister had the identical illness and needed the identical drug. The brother got approved and within days advanced to excellent health, while the sister was continuing to decline in her health because she was not able to get this drug, due to a denial. It was the same insurance provider, same state, and they had the same doctor who wrote a letter for each case and sent it in to the insurance company. What came out of that story was it came down to the person reviewing the request and what they felt was reasonable. The person reviewing the brother's information felt this was reasonable and the person reviewing the sister's information felt it was unreasonable. They went on the Today show, and within moments the health insurance company overturned the ruling and gave the sister the drug. It's a story that had the message, that sometimes it's whatever the health representative decides. It was a very remarkable story. At least no matter what you are able to pay for the MRI and get that for yourself. Maybe you can deduct your out-of-pocket unreimbursed medical expenses on your taxes and try to recoup some of the out-of-pocket expense there.
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Inspired, so glad you are back, love your uplifting posts...thank you for finding the article I was referring to, you are the best!!
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Not sure if anyone can help. I had over the last six months odd little pink spots that come up. The first one lasted about two weeks and then went. Then two more come up just below my scar on the missing lefty. When that went another came up below my scar. Then when that was clear one came on the side of my right breast. That one is still there. I noticed two new ones this morning. Sometimes they are a little bit itchy but thats all. I went to my Doc this afternoon and she biopsied the one on the side of my good (well at least I hope its good) breast. Results in a week. It's funny that they come up and then eventually go. Has anyone had anything like this. I have never suffered with spots of any kind before this started.
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Cocker - You do have something interesting going on, oh my! I'm glad you were able to see your doctor and have a biopsy. Now for the stressful wait. I know you keep busy and hopefully time with fly by. As for my story: For several years I had something that sounds like it might be similar. Mine was just one spot, just about an inch in diameter, that would come, stay a week or two, then leave. I was finally at the PCP when it was visible, he biopsied, and it turned out to be "nothing." Whatever it was, i"ve forgotten. That was on my good breast which is also gone now. Chapter 2: About two weeks ago I found a 2 inch very red spot on chest, about where the previous spot would show up. But then, I got more spots. This time PCP thinks they are an allergy to some new meds I had just started. They are slowly going away. I'll see doc again in 2 weeks to be evaluated again. Guess that will be my chapter 3.
Jan
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Mine ended up being shingles when I had a mysterious rash. It would come and go.hope it is nothing let us know.
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